Monday, November 23, 2015

MOvember II, Beating Cancer in a Manly Fashion

     Much of the patient-authored info floating around the net comes from our sister cancer warriors, and it seems that the boys are less likely to publish their thoughts.  Our wives and mothers know all too well how we handle being sick, so it's worth sharing some thoughts with the gents out there on how we get through this.  The points listed below are things that I was either told or should have been told, mostly from my medical team or survivors.  Getting through the initial stress of diagnosis was the least supported part of my treatment, but an experienced patient can nudge you in the right direction.  Wax the 'stache into some handlebars, pour a brandy, light off a good stogie and scroll on.  Here's how we beat cancer in a manly fashion.

Forget everything you ever knew about cancer, treatment, survival and how you expected to handle it.  If you thought you'd never seek treatment if diagnosed, or that treatment was pointless and everyone who gets it dies anyway, you're wrong.  Cancer and treatment are extremely complex, and the treatment between forms of the disease can be radically different.  Your will to keep walking on this planet will overpower your previous thoughts on dying with your boots on instead of seeking treatment.

You're not dead.  Not today.  Not tomorrow, either.  No matter how serious your case is, there is time.  It may sound ridiculous, but the stress at diagnosis feels like you're going to be executed at dawn.  Take a breath and read the next paragraph.

Prepare for the most intense stress of your life.  I dealt with some unbelievable mental pressure in my long law enforcement career, but the first couple of months after cancer diagnosis set the high mark.  It's time to clear the calendar and the mind, reduce your load and take any steps necessary to slow down and get a grip.  You'll stop sleeping. It's time for family, work and obligation to know that you're on the bench for now.  Your health must be the center of attention for a while.  The world will have to learn how to revolve around you for a bit.  Many head for the bottle or anti-depressants at this point, but I believe it's important to get through all of the stages of this hellish experience with as clear a head as possible to get it over with.  

Get off Google.  You want answers, so you'll become an online researcher.  It's a natural response, but results are hard to understand.  Survival charts can look pretty dismal, but they don't account for variations like age, existing health, treatment tolerance, genetic mutations, etc.  My favorite go-to place for information online is M.D Anderson's web site and COLONTOWN, a very closely moderated and secret Facebook page for survivors and caregivers.  Many people tend to fade from online forum communities after they are cured, but Facebook users stick around. "COLONTOWNies" are very helpful with new patients, and these sort of groups are extremely helpful and encouraging, and after a few weeks you'll understand what I mean about statistics. It takes some searching, but I guarantee there's something like it for whatever cancer you're facing.  You'll be very surprised at how many survivors are walking around disease free after beating aggressive forms of the disease.

Everything is slow.  Test results can take forever.  Appointments are days or weeks away.  Surgeries seem to be over the horizon.  It's not like a heart attack or a car crash.  Updates take a long time.  You'll feel like a shark, wanting to constantly move forward.  Be prepared and understand that the wait isn't killing your body, just your patience.  

Prepare for the reactions of other people.  This was the one I never saw coming.  Everyone around you will encounter stress over your cancer diagnosis, and their response may not be helpful.  It may even seem thoughtless or rude, or cause more stress.  The best defense is a buffer, a person willing to pass news and keep the load off the patient.  Others will have to understand that you're the center of the universe for now.  It's not a comfortable place to be, but it's necessary.  Make sure people understand what sort of interaction you need, and that needing to be alone to rest doesn't mean you have a pistol in your mouth.  Whether you need some space or some company, be honest to everyone around you. This is a great topic to share with other survivors.  

Understand "positive thinking."  We're warriors, fathers, fixers, teachers and leaders.  We're closer to reality and probability than the sending of good vibes.  Most thoughts will be pretty dark.  There's a lot of dread, ugliness and death around cancer, and positive thinking won't cure or prevent it.  Acknowledging the dark stuff is vitally important and a part of our thinking, but don't let go of anything that makes you happy and clears your head.  You'll need it.  If you're hounded about your dark thoughts, search hard for cracks of light to break the trend.  They're out there and will keep you sane.  

Don't be a jerk.  This is universal, old-fashioned good stuff from your dad here, but I've seen big, brawny guys act like bratty little kids in the chemo room.  This is where you "man up."  You'll feel like shit and be terrified, but don't take it out on anyone trying to take care of you.  Sometimes we have to be carried. Tighten up so you're easier to lift. If you're married, you'll understand why dealing with sickness is in the vows.  Treat your caregivers and supporters with the love and respect they're earning.

Dig in.  Treatment sucks.  It's painful and tiring.  It's frustrating because it eats your masculine fiber.  It does grow back, but it's slow.  Pull-starting a lawn mower or walking to the mailbox might be a "heavy" day for a while, but it's important to file that away as a healing evolution and be proud that you made it.  You'll get tired of sitting around being weak, but it will pass.  It sounds horribly cliche, but you have to be stronger than the disease.  Most importantly, listen to your care provider and do exactly what you're told.  If you go through chemotherapy, be prepared for temporary changes in mood and thought processes.  You'll likely be scatterbrained and emotional.  You may cry over chick flicks.  Really.

Beware the false prophets. You'll be amazed at the idiocy that people believe on the topic of cancer.  Don't discount valuable holistic and alternative treatments that help with your recovery and minimize side effects, but don't buy into the hype.  Your medical crew isn't out to suck money from you.  Saving your life is expensive and worth it.

Seek the best treatment possible.  Large cancer hospitals offer treatment may not be available in smaller cities.  That's not to say that physicians or treatment in other places is sub-par, but you'll find very specialized medicine in the bigger centers.  I received excellent care at my local center for chemo and radiation, but my surgery was handled by a specialist in a large center. The downside to big hospitals is that the cost of travel may be prohibitive for some.  There are charities and support groups for patients needing help with these extra expenses.  Please consider supporting them.

Do exactly as you're told.  Take notes, bring someone with a clear head to appointments,  read everything that's given to you, ask questions and follow directions. Know what you're supposed to do and follow every instruction.  Don't hide symptoms.  Most treatment centers offer an online log to write down notes as often as needed for your staff to monitor how you're doing.  Use it.  Feedback to your care team is critical.  Don't make someone have to tell your doctor how you're really doing.  This valuable advice saved me quite a bit of discomfort along the way.

Don't fear tough changes.  People have died because they feared life with a colostomy or similar life-changing mod to their factory gear.  I had an ileostomy (similar to a colostomy) for seven months, and it's not a big deal.  Colostomy bags and similar appliances come in cartoon character patterns for infants and children.  You can be as tough as them.  There's a reason you hear the word "life" before "limb." We're pretty resilient creatures and can adapt to just about anything.

Recovery feels strange.  Treatment is a battle.  It's a challenging, busy time.  When it's over, things are oddly quiet.  You're checked less and less often as you heal and beat the disease, and it feels very odd to not be under constant care.  It's tough to focus on rebuilding your health, but that's the goal.  Not only does restoring health seem to help prevent recurrence in some cases, it will be critical to survival should you have to fight again.  It may take years to feel completely normal again.  This is a great time to communicate with other survivors and keep your head straight.

When you're healed, give something back.  Be thankful and appreciative of your supporters and medical staff.  Help others.  Stay active in patient social media circles.  We always want to hear from survivors.  Volunteer at your local center.  Participate in fundraising and awareness.  Grow a goofy Victorian mustache and spam your friends with a blog.

Hopefully this is information that my growing reader base will never need.  Just about every survivor I've encountered is happy to discuss their treatment, especially the hacks that make it more tolerable.  We always look to veterans of the job at hand for pointers, and cancer is no different.  Never be afraid to ask for help.  It's out there.

Saturday, November 14, 2015

MOvember Message for Men

Movember/No-Shave-November is upon us.  It’s a great time to sport the monster “mo” to support a cause.  I’m sure there’s no shortage of charities happy to take money, but I’m using my magnificent handlebar creation for awareness.  I’m a colon cancer survivor.  What’s more, I’m the annoying diet/exercise guy who wouldn’t eat the office birthday cake and takes lunch at the gym.  In a 24 year police and military career, I’ve been subject to physical fitness tests and medical exams all my adult life.  My bride and I are solvent, young empty nesters who live mostly on home-cooked organic food.  I don’t have a family history of colon cancer.  I’m not a cigarette smoker or heavy drinker.  Statistically, I shouldn’t have cancer, but at 42 years old, I got the bad news.

I’m very often asked how I discovered the disease, and that’s an important part of my story.  I was passing blood.  In the vast majority of cases, that’s not a big deal.  It’s almost always attributed to hemorrhoids, which is the diagnosis given in my first doctor’s visit, without an exam.  I was given an expensive foam medication and sent home.  I returned a week or two later, insisting that I did not have any other symptoms supporting hemorrhoids and was still bleeding.  I was finally checked for ‘roids the “old fashioned” way and nothing was found.  I was referred to another doctor who insisted that I was “fine” before performing tests that discovered a tumor.  In further testing an unrelated tumor was found in my thyroid.

Otherwise, I felt fine.  I had recently made personal record length mountain climb and competed in the U.S. Fencing nationals.  I didn’t feel sick, but a year of treatment took care of that.  After radiation, chemotherapy and five surgical procedures, I’m currently cancer-free.  I’m not back to my original athletic levels, and that may never happen.  That’s one of the tick marks in the “sucks” category, but I’m alive and otherwise happy.  Whether or not I’ll stay that way for long is a complete crapshoot, but my cancer was discovered rather late (stage IIIc) which means that I most likely won’t have to deal with having gray hair. 

A number of reasons led me to be open about my experience, but the most outstanding was learning how many people lived with symptoms of the disease and never sought treatment.  Even more shocking is the number of people who sought treatment and were sent home with a non-life threatening diagnosis.  I was completely amazed by how many people asked detailed questions about the color, frequency and other characteristics about the bleeding because they were experiencing the same issues but wouldn’t see a doctor.  In a Reddit thread about assumptive behavior in medicine, I shared my story.  Here’s a response from someone appearing to be in medicine:   

  "A digital rectal exam can't diagnose colon cancer.  The vast majority of people who come in with bright red blood per rectum have hemorrhoids, it's not worthwhile to have them all undergo colonoscopies, plus if we did that, it would keep a lot of people from ever seeing the doctor." 

This person is right, but I have two issues with this.  First, my personal health concerns do not involve “the vast majority of people."  I’m all about the greater good at times, but this isn’t one of them.  Second, a digital rectal exam, in my case, excluded most hemorrhoid conditions and led to a colonoscopy.  Had I waited longer than a couple of weeks to press further, my life would have been shortened by many years, especially many good years.

Colon cancer isn’t just a man’s disease, but male survivors just aren’t as vocal as our fairer counterparts.  In honor of the No-Shave November theme, here are a few tips I’ve picked up along the way for the midlife guys to squeeze a bit more juice out of life.  Gentlemen, I give you Matt’s MOvember Message for Men in a social-media listed format:

1.       Take charge of your healthcare.  You’re driving the boat.  Ask questions and make sure you understand everything. We’d all rather face a bear than deal with tough health issues.  We have to be emotionally courageous as well as physically.

2.       Take advantage of free screenings.  Blood drives, employee clinics and health fairs offer free screenings that may point out problems before they grow beyond control.

3.       Seek the best care.  We will drive hours for a good hunting lease, a new car or a concert.  Why not two hours for a specialist?   

4.       Don’t be cheap.  Yes, good healthcare is expensive and our system isn’t perfect.  Honest discussion with your provider will very often bring down the cost for a cash patient.  Much of the overhead in medical care is in the cost of dealing with insurance.  It never hurts to ask.

5.       Diet and exercise aren’t just buzzwords.  Yes, even athletic people with the perfect diet get cancer, but that’s not an excuse to live on potato chips and beer alone.  Facing the disease with a strong body significantly improves your survival because you can tolerate aggressive treatment and recover faster and stronger than most.  You don’t have to run marathons or Crossfit yourself to the orthopedic specialist.  Try walking for an hour.

6.       Don’t be afraid.  I have actually heard grown-ass men say that they won’t get any exam that involves butt stuff.  It’s time to grow up and get a camera poked up your arse.  Trust me, it’s better than the ass traffic involved in beating cancer.  If you get cancer, you’ll want to beat it.

7.       Don’t smoke.  Cigarettes will kill you.  

8.       Know your history.  Health problems are often hereditary, so start your prevention early.

9.       Easy on the booze.  Here’s another area where moderation makes the man.  If you have a problem, fix it.

10.   Your mind matters.  It’s time for us to realize that John Wayne was an actor, and just being tough all the time doesn’t fix everything.  It’s true that there’s a lot of hype and over-diagnosis in mental health issues, but depression, anxiety and similar issues are very common and will take a toll on physical health if not faced.  Grow a pair and face the demons.  Turn on the bullshit filter and turn off frustrating news feeds.  Whether it’s in a church, circle of friends or the middle of a lake, get your thoughts straight enough to sleep at night.

11.   Don’t discount “alternative” therapies.  Yoga, massage and chiropractic treatment will repair or prevent many problems before you take it to a specialist.  It’s not witchcraft.  Don’t be the guy in assless motorcycle chaps calling others “gay” for going to a yoga class.  Yoga guy is surrounded by women in tights.  Assless chaps guy is hanging out with other assless chaps guys.  Let that image sink in.

12.   Beware the snake oil.  I have had people look me straight in the eye and tell me that consuming some obscure fruit or baking soda will cure cancer.  Remember the red wine/resveratrol thing, and how great it is for your heart?  The damage caused by alcohol outweighs the benefit.  The bullshit tide rides high in health issues.

13.   Make time.  Take time for exercise and mental decompression.  You’re not abusing your kids by taking some “me” time and clearing the head.  You might accidentally teach your kids that everyone deserves a little space.

14.   Be safe.  Break out the safety glasses that came with your finish nailer.  They’re probably still in the wrapper.  Be safe in your work and play.  Injuries in the 40+ class will take you out of the game longer.

15.   Encourage your buddies.  Share success and lean on others to help with health goals.

Take care of the machine, gents!